Williams Syndrome Forum, Australian

Online forum.
Website: http://wsaustralia.proboards55.com/index.cgi

Wolf-Hirschhorn Syndrome Association (AWHSA), Australian
Wolf-Hirschhorn Syndrome (WHS), also known as Wolf Syndrome along with Pitt Rogers Danks Syndrome (PRDS), are both rare chromosomal disorders caused by a deletion from the short (p) arm of the fourth chromosome known as 4 p minus (4p-). Support Group is a voluntary not-for-profit self-help organisation dedicated to educating parents about Wolf-Hirschhorn Syndrome and networking them with other parents of affected children. * We currently are in contact with over 30 families from all over Australia and New Zealand.

Website: http://home.vicnet.net.au/~awhssg

Related Community Support Organisations

ARAFMI Mental Health Carers and Friends Association
The association provide support, information and education to the community, particularly relatives and friends of individuals with a mental health problem.
Website: http://www.arafmi.asn.au

Arthritis Foundation of WA
Including: Osteoporosis WA, The Ankylosing Spondylitis Support Group, The LINK Group, Fibromyalgia Support Group and General Arthritis Support Groups. The objectives of the foundation are to reduce the incidence and disabling effects of arthritis, osteoporosis and related conditions.
Website: http://www.arthritiswa.org.au
 
Asthma Foundation of WA Inc
The foundations objectives are to raise awareness of asthma in the community, raise funds for asthma, research and provide educational and support services to individuals with asthma, their families, carers and health professionals.
Website: http://www.asthmawa.org.au

Australasian Genetic Alliance

The Australasian Genetic Alliance (AGA) is a network of peak Not for Profit, Non-Government Organisations that represent genetic support groups, individuals and families in the Australasian region who are living with a genetic condition or a genetic predisposition.

For information on genetic support groups and services in your state, contact the relevant state Alliance member:

Australian Association for Families of Children with a Disability (AAFCD)
To provide information, support and advocacy for families of children aged under 25 with disability in all States and Territories of Australia.
Website: http://www.aafcd.org.au

Bonnie Babes Foundation Inc (WA Branch)
The foundation counsel families who are grieving after the loss of a baby. It has a 24 hour, 7 day per week grief counselling lines in Australia. The Foundation also assists in education to health professionals.
Website: http://www.bbf.org.au

Breast Screen WA
The organisation provides a high quality, FREE screening mammography service for women in WA 40 years or over with no breast symptoms.
Website: http://www.breastscreen.health.wa.gov.au

Carers Association of WA Inc
The Carers Association is the peak body representing the interests of all carers in Western Australia.  A carer is an individual who looks after a family member or friend who has a mental or physical illness or a disability, or who is Frail Aged. To actively enhance the quality of life of all carers in WA. They provide counselling services.
Website: http://www.carerswa.asn.au

Clinical Genetics, Australian Resource Network for
To support the clinician’s role in genetic services at point-of-care, this website is established to provide, at their fingertips, useful and up-to-date information for clinical genetic practice.  
Website: http://www.arcgenet.org.au

Crisis Care Support Service - Perth Home Care Services Inc

The Crisis Care Support Service offers short-term emergency support for the main carers of people who are frail aged or have a disability in the event of:

 Critical Illness;
 Carer's Stress;
 Any other urgent incident.

This service is specifically for those incidents that occur without warning and result in the main carer being unable to continue to care for their family member. Crisis carers can provide support in the home for up to three consecutive days. Often, less than 24 hours support is required, and sometimes morning and evening services over a few days are able to meet the clients needs. Ph: 9204 7801
Website: http://www.phcs.org.au

Crohn's and Colitis Association, Australian
There mission is to generate and foster awareness and educational programs targeted at persons diagnosed with IBD, their families, health professionals and the general public.
Website: http://www.acca.net.au

Disability Abuse & Neglect Hotline, National

This is a FREE service that takes reports of abuse and neglect of people with a disability. Phone:  1800 880 052, TTY 1800 301 130 (between 8am-8pm every day incl. weekends).
Website: http://www.disabilityhotline.org 

Disability in the Arts, Disadvantage in the Arts, Australia
Our focus is on creating opportunities and significant beneficial social change with people who have a disability and/or mental health issue living in local communities across WA.
Website: http://www.dadaawa.org.au

Disability First Stop
Disability First Stop is an innovative service that will assist people and their families to get the help they need when a person is newly diagnosed as having a disability. Disability First Stop directs people who have had an accident or have been recently diagnosed as having a disability, towards the appropriate agencies to give them and their families the support they need.
Website: http://www.disabilityfirststop.asn.au

Ethnic Disability Advocacy Centre
The objectives are to promote, a, dvocate, support, information, referral, networking, lobbying and training people with disabiliti, es from culturally and , linguistically diverse backgrounds and their families and carers.
Website: , http://www.edac.org.au

Eye, Lions Institute Western Australia
Provides specialist clinical services,medical training and community services.
Website: http://www.lei.org.au

GAIN – Gynaecological Awareness Information Network Inc.
GAIN is a community-based organisation of dedicated women who, have endured the trauma of being diagnosed and treated for gynaecological conditions.
Website: http://www.gynsupport.com

Genetic Alliance Inc. Washington, DC.

http://www.geneticalliance.org

Genetic Services of Western Australia
This service provides a state-wide comprehensive, and fully integrated clinical and laboratory, genetic service with equitable access, to enable informed choice in the prevention and treatment of genetic conditions and to reduce the burden of genetic conditions in the community. It provides both clinical and counselling services.
Website: http://wchs.health.wa.gov.au/services/genetics

Health Consumers’ Council of Western Australia Inc
The Health Consumers' Council is an independent community based organisation, representing the consumers' 'voice' in health policy, planning, research and service delivery. The Council advocates on behalf of consumers to government, doctors, other health professionals, hospitals and the wider health system.
Website: http://www.hcc-wa.asn.au

Hereditary Spastic Paraplegia Research Foundation (HSPRF)
A health promotion charity that is a voice for HSP sufferers throughout Australia. It will raise funds for HSP directed research and make applications for funding by Government. It will promote the establishment of gene testing facilities in Australia and maintain a database of affected individuals. The HSPRF will become a focal point for neurologists, scientists, gene counsellors and academics as well as sufferers.
Email: rjbligh(AT)bigpond.net.au
(Website not yet available)

Kalparrin Centre, The
Including: Parents of Children with Disabilities
The Kalparrin Centre is an organisation committed to providing practical and emotional support to families of children with special needs who require ongoing care and support and families of children with special needs who are under the unique stress of awaiting diagnosis or whose diagnosis is unknown. They provide disability related self-help or support groups.
Website: http://www.kalparrin.org.au

Kidney Health Australia

Kidney Health Australia, formerly the Australian Kidney Foundation, was officially formed 35 years ago. It is a non-profit organisation with a mission to be the lead organisation promoting kidney and urinary tract health through research, advocacy, education and health service excellence.
Website: http://www.kidney.org.au

Mums - National Parent to Parent organisation for parents or care providers of a child living with a disability, rare or not so rare disorder, chromosomal abnormality or health condition. MUMS' mission to provide support to parents in the form of a  networking system that matches them with other parents whose children have the same or similar condition.

Through a database of over 20,000 families from 54 countries, covering over 3400 disorders, very rare syndromes or undiagnosed conditions can be matched. Parents can then exchange valuable medical information, as well as, the names of doctors, clinics and medical resources or research programs. Families provide each other with emotional support and they don't have to feel so alone when they have each other to reach out to in time of need. MUMS networks with other organizations which do matching, thus expanding the possibilities of finding a match.
Website: http://www.netnet.net/mums

National Breast Cancer Centre
The centre strives to reduce mortality and improve the well-being of women diagnosed with breast or ovarian cancer.
Website: http://www.nbcc.org.au

Neurological Council of WA Inc, The
The Neurological Council of Western Australia was established in March 1992. The Council is a collaborative Organisation which functions as the peak body in neurological disorders in Western Australia, and currently represents the, common interests of 29 neurological organisations.
Website: http://www.ncwa.com.au

Office of Population Health Genomics, Department of Health Western Australia
The objectives of this organisation is to minimise the negative impact of genetic disease on the health and wellbeing of Western Australians and facilitate the integration of genetics into all aspects of public health research, policy and programs with maximum benefit to Western Australians and minimal costs to individuals.
Website: http://www.genomics.health.wa.gov.au

Parent To Parent New Zealand Inc
Provide information and support network for parents of children who have special needs, disabilities and health impairments from common conditions to the rarest of conditions. The services are free to families in NZ and network with organisations and families overseas. Parents, family members, professionals, siblings, Whanau can access the organisations services.
Website: http://www.parent2parent.org.nz

Primary Immune-deficiency Network Ltd. (APIN), Australian
apin(AT)apin.com.au

(Web site not available)